Sorry I haven't written in a while. A lot has been going on, and I've had lots of ups and downs. My spirits have been so much higher after our Thanksgiving weekend and I am feeling the best I have yet today. I thought today would be a good day to write and try to update everyone a little bit. Spending the last 4 days with Phillip, Elise and our family for Thanksgiving helped me so much. I want to share a few good things that have made me happy along with some news from doctors appointments we've had during the past couple of weeks.
First off, I just want to say thank you again to everybody for all of the prayers, sweet messages, meals, flowers, phone calls....it has meant the world to me. Last night Phillip, Elise and I took a stroll around our little cul-de-sac. I am able to walk short distances now that some of my pain issues have been helped. (I'll tell you more about that in a bit)
Phillip spent all day Saturday putting Christmas lights on the house. He worked so hard making it look pretty for us! As we were walking down the street, I looked up at the house glowing with lights decorated for Christmas, and I just burst into tears. It was just so beautiful and I felt so grateful. How did I get so lucky? I have this amazing husband who loves me unconditionally, and thinks I am beautiful even when I feel disgusting. We have a beautiful, healthy baby girl who is smiling and giggling at me when I look at her. And we have a beautiful safe, warm place to call our home. Something inside of me changed and I knew everything was going to be ok. We have this little bump in the road to get over, but I still feel like the luckiest girl in the world.
In my last blog post I talked about a few challenges I was having. I'm happy to say a lot of those issues have become so much better! For several weeks I felt like I was doing nothing but measuring body fluids. It was becoming too much. I originally agreed to take part in a study to show how fluid intake effects the health of new ostomy patients. I had to record every ML. I drank, and record my output too. I emptied my ostomy bag, measured that, measured urine, and had to measure what came out of my drains. It was just gross and it really took a toll on me. I felt disgusting. I think it was important at first to show me how much water I needed to drink. They said over half of us who have this surgery would end up back in the hospital. I was determined to not let that happen to me. So seeing how much liquid I was losing did help me see how important it was to drink up! However, after recording this info for a few weeks, I asked if I could kindly be released from the study. I needed to not have this on my mind all the time. It would take so long measuring and cleaning up. I just couldn't do it anymore. The doctors were great and said I had been doing a good job and let me out of the study. Since I've stopped recording it, it has helped my spirits tremendously!! I don't have to think about it so much. Just as long as I make sure to drink at least 2500ML a day. I fill up my big Nalgene bottle throughout the day, and don't go to bed until I drink over 2 bottles full. Problem solved! :)
Another good thing is I visited a certified ostomy nurse at Shands, in Gainesville. Unfortunatey there are no certified ostomy nurses anywhere in this area. I have had 3 home nurses come out, and I know they were doing the best they could in trying to help me. But with something like this, you really need to see someone who specializes in ostomy care. The ostomy nurse helped teach us some tricks and it has helped my skin heal. With this pain gone I am able to be much more active. She really was a lifesaver. While we were at the doctor's office I alos had my drain removed! I was so HAPPY to get that thing out of me. I felt like I was always having to be so careful so it would not get pulled. It was bulky under my clothes and I was so happy to see that go!
Since some of my pain issues are gone I've been able to hold Elise more. I still place some pillows over my belly so she won't accidentally kick me where my inscisions are. This has made me so much happier. It has been so emotionally painful not to be able to hold my baby girl. I still can't be the active mom I was before the surgery quite yet. But it's a start!
Soon I really want to post about how I learned to get my ostomy appliance to properly fit. This issue was so diffucult emotionally and physically. There are a lot of details to cover, so I wil write about this more later.